My chronic pain journey before surgery

Part of me doesn?t like to think about my chronic pain journey, what I went through in the early days, and how tough it was at times. But then part of me likes to remember how far I?ve come.

This blog post is a very brief summary of the first 2 years of my chronic pain journey.

When my pain began

My pain began in June 2012 when I hit my coccyx on the wooden arm of my sofa. I was playing with my dog Milo (we didn?t have Wesley at the time) and I fell backwards – and whack! I remember it was excruciating pain at the time but after the initial shock of it, it soon settled down. Because it didn?t cause me any bother I forgot all about it.

Several weeks later I was in a lot of pain when sitting but I carried on working full time, which was mainly desk work and sitting in meetings. Even sitting on the sofa and at the dinner table at home was extremely painful.

I remember going to the gym and the next day I could hardly sit down at all; the pain was so bad. I went to the doctors and tried to explain the pain I was feeling and she asked me had I had a fall and I remembered my fall on the sofa. That was it, the pain was caused by that, and by carrying on as normal – sitting at work, sitting in the car, sitting to eat my dinner, watch TV, the list goes on – I had not given it chance to heal.

What ?it? was, I had no idea. But it gave me a reason for my pain. I was told that there was no point in doing x-rays as they couldn?t fix anything even if it was broken, I just had to let ?it? heal on it?s own. So I was sent away with a tube of anti-inflammatory pain relief gel and told to carry on as normal.

Normal was never the same again

Over the following few months the pain got no better. By now I was off sick from work as I couldn?t physically sit in my office chair without being in intense pain. I had a coccyx cut-out chair but this didn?t help much at all. If anything, I could sit for slightly longer before the pain kicked in, but once it had, I had to get keep getting up again.

I went back to the doctors and was told that I had coccydynia – ?a very fancy name for ?pain in the arse?. Again, this made me feel better mentally as ?it? now had a fancy name and my pain felt more justified. If it was in the medical dictionary, it must be a real thing.

I was referred to see a specialist at my local hospital. I had done lots of reading and research about coccyx pain, and chatted to people online to find out more about the treatment options. It was basically a choice between steroid injections, manipulation under anaesthetic (MUA), or coccyx removal. The specialist immediately said he doesn?t do coccyx removal surgery. He gave no explanation why, so I?ve always assumed he?d had a bad experience. I?d also read that it was not guaranteed to work, so maybe he just ruled it out on that basis. I?d still not had any investigations done to identify what was causing my coccydynia, so reluctantly he sent me for an MRI scan. The reason he gave for this was to rule out anything sinister. Those were his exact words, and at that point I started to panic.

My scan results showed nothing sinister (phew!) and in his opinion, there was nothing wrong with my cocccyx either. He was starting to sense my frustration so he offered to do a steroid injection and manipulation under anaesthetic (MUA).

It didn?t work.

In all honestly, I didn?t like his attitude; he made me feel like I was making up the pain, and like it was an effort for him to try and help me. I requested a copy of the MRI results and decided to seek help elsewhere.

Going private

I paid privately to see a chiropractor in London. Before I made an appointment I emailed him with the background about my pain, and he said I could send a copy of my scan results to him and he?d have a look. He immediately said there were some abnormalities with my coccyx (hallelujah – a confirmed reason for my coccydynia!) and advised I go and see him for an assessment.

Several visits and hundreds of pounds later (for the treatment sessions and the travel to London), it didn?t work.

My pain was no better, and despite his request to see me on a regular basis, I knew I couldn?t sustain the travel, nor the expense. He kindly wrote a report of his diagnosis and the treatment he had tried, and suggested I see a local chiropractor.

It didn?t work.

I must have had 20+ sessions, so I gave it a good try. And by this point, the chiropractor was equally as frustrated as I was as he had tried all sorts of treatment options and methods.

Trying to get more help

In my research I had come across a sit-down/stand-up x-ray and it suggested that this was the only way to confirm a diagnosis for coccyx problems. I went back to my GP with some printed materials off the internet to support my request of getting one of these x-rays and thankfully it worked. My local hospital had never done this type of x-ray before but they were willing to give it a go. I eventually got an appointment and they used the guidance from the internet that I took with me to make sure they did things correctly.

Several days after the x-ray, the head of the department rang me and couldn?t confirm exactly what was wrong but did say my coccyx looked abnormal. I was getting really fed up by now. I just wanted to know what was wrong and for someone to help me.

I did some more research online and came across a specialist based in Warrington. I went to see him with all my x-ray and MRI images and straight away he said my coccyx was dislocated in two places. I briefly summarised the last couple of years and how I was, by now, fighting for my job and needed something to be done. He offered to do the coccyx removal surgery but insisted that he first try the steroid injection and MUA now that he has the x-ray images to guide him better.

Please do comment or get in touch if you?ve had similar experiences to me. Do you have a diagnosis for your pain? How did you get the treatment you needed? Has your journey been as long and troublesome as mine?

Hello

I’m Alice, I’m here to help you cope with and understand chronic pain. I share my experiences, tips and advice to help you carry on doing the things you enjoy and teach your friends and family to understand more so they can support you.